Growing Girls

There isn't much going on in our neck of the woods the past week or so.  Brandon and I both start our prospective sport seasons on Monday, so we will be leaving the girls for the first time with non family members!  We have been lucky enough to find a WONDERFUL nanny that was recommended to us from a very trusting neighbor!  We are excited for her to start working with us and hopefully become a very big component of our family. :)  I am thankful that I start cheer before work, so I won't be gone all day right away.  I can ease into it slowly! :)

Lorelei is doing wonderful.  She is rolling over all the time on her own!  We are now focusing on working her trunk to strengthen her upper body to sit up.  She is holding her head up so well now that we can put her in the bumbo seat and help her to hold her trunk up straight!  She is smiling all the time now, but is still stingy with her laughs. It's special when she does laugh though! :) The developmental specialist that sees her twice a month says she looks great and is on the right track.  She is meeting her milestones as of now and we love watching her grow! :) At her 4 month well appointment this past Tuesday, Lorelei was 12 lbs 14 oz and 25 inches long. She has her first appointment at the Down's Clinic at UVA in November.

Mikaela is also doing wonderful, although she has been more of a drama queen this week. Brandon and I do not want to constantly hold or have the girls held because we want them to be able to self soothe and put themselves to sleep. Lately, Mikaela has been throwing a fit whenever we leave her in the swing or the playmat during the day. It's ridiculous! Mikaela is finally rolling over on her own, Lorelei was rolling over first. It's funny, because sometimes she will roll onto her stomach but isn't sure how to go back and she get so mad! Mikaela is talking up a storm, when she isn't wining! At her 4 month well appoinment this past Tuesday, Mikaela was 13 lb 11 oz and 26 inches long.

From Pregnancy to Birth

I was/am very hesitant to share this story, but Brandon, being the kind hearted person he is, thinks that it would be a great story for other families to read that may go or have gone through the same or similar situation.

Being my first pregnancy, you can all imagine how excited Brandon and I were!  After we got over the shock of having twins were walking around with open arms for the two babies I was carrying.  During my first trimester, our specialist suggested getting a few tests done, including the Nuchal Translucency Test.  Our test results came back that there was a 1 in 16 chance that Lorelei would have Down Syndrome.  After we got these results, we had our "mourning" period.  During the 2nd and 3rd trimesters, our doctor couldn't see anymore signs for Down Syndrome.  At the very beginning of my 7th month, I was placed on 1/2 day bedrest because my cervix was weak.  This worried us because we didn't want me to have to use the days from work because we couldn't afford for me to have to take days without pay.  A week later, I was placed on full bedrest because I was already dilated 1 cm and Mikaela's amniotic sac had lost some fluid.  I stayed in the hospital overnight after that appointment so the girls could be monitored and had to go in twice a week for a non stress test.

7 weeks out from my due date, I had a full day of appointments.  I had a non stress test at 11 AM and then an appointment with the specialist at 1 PM.  Brandon took the day off and went with me to both appointments.  The OB told me I was still only 1 cm dilated but that my cervix was extremely weak and that she didn't have to see me again.  I was only 33 weeks along.  That night I was having contractions and the girls were born the next afternoon....what a whirlwind that was!

Mikaela was born at 3 lbs 9 oz, 17 inches long.  Everything was great with her! She was under the lights for a little bit because of jaundice, but all we had to wait for was for her to feed from a bottle for every feeding for 24 hours.  Mikaela was in the Winchester NICU for 4 weeks.

Lorelei was born at 4 lbs 7 oz, 17 inches long.  In the OR, the neonatologist came to us and told us that Lorelei was having difficulty breathing and that it seemed like her nasal passage was blocked.  Lorelei's nasal passage never opened completely.  There was still bone and tissue blocking the passage.  Two days after the girls were born, Lorelei was transported from Winchester to UVA, 2 hours away.  Brandon and I left that night and met her at UVA, leaving Mikaela in Winchester......My cousin and his girlfriend were gracious enough to pay for a hotel room for us that night.  The next morning, Friday, Lorelei had her first surgery.  The ENT cut out the tissue and bone and inserted stints into the passageway.  She was doing really well.  The following week, Lorelei was transported back to Winchester to be with her sister.  The stints stayed in for 2 weeks and were then removed.  Shortly after the stints were removed, Lorelei became very sick with a virus and a bacterial infection and was in the isolation room in the Winchester NICU.  During her sickness, scar tissue built up in her nasal passageway.  There was one very bad night where she couldn't breathe and the doctors and nurses worked faster than ever to get her on a ventilator.  Lorelei was transported back to UVA to get the same surgery done again.  The stints were to stay in for 4 weeks this time. Lorelei was in the Winchester/UVA NICUs for 8 weeks.  She came home while the stints were still in, so Brandon and I had to suction them with the tube every 4 hours or so.  After she got the stints out the 2nd time, everything healed correctly! :) She is now doing wonderfully!  We know that in the future Lorelei will have other issues that we will have to deal with and may even have to get stints in her nose again, but we are so thankful that is all we had to deal with in the beginning as hard as it was for us!  We are lucky enough that Lorelei's heart is perfectly normal and she did not have to have a heart surgery at such a young age.

The doctors and nurses at the Winchester NICU were such a blessing! There is no way that Brandon and I could have handled everything as calmly as we did if it weren't for them!  They will always have a special place in our hearts and we will be thanking them for the rest of our lives!

First time in the Pool!

We spent all of last week in Chesapeake with Brandon's mom, Peggy, and stepdad, Chris. :) It was nice to have some extra help around and get some time to go out and meet my sister, Carmen, and her boyfriend, Travis for dinner.  Chris and Peggy have a pool, so the girls were able to experience their first pool!

They both seemed pretty indifferent to it.  They weren't overly excited but weren't upset about being in there at all.  They both got dunked, Mikaela 3 times!

Lorelei only got dunked to just above her nose. With her small ear canals, we didn't want to get water in her ears. :) Mikeala was completely dunked 3 times by Brandon, but she was fine with it! Hopefully we have two little fishes in the future! :)

The Beginning

Not only did we have to handle the fact that we had twins, but that Lorelei was diagnosed with Down Syndrome.  Would we mourn?  Would we worry?  Would we be happy about the challende?...

We were all of those!  Emily Perl Kingsley says it best:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

We are lucky and get to enjoy Italy and Holland at the same time! We know there will be challenges, but there are with every baby and every family.  We look forward to learning about the world through the eyes of Lorelei and Mikaela.  They don't see what we see and I believe we need to look at things the way they do to continue to enjoy life.

The girls are only 4 1/2 months old, but we have already seen them meet so many milestones!  They are both growing so fast and seem to be enjoying life.  They life and "talk" to us everyday and Brandon and I take in every "word" with a smile!